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Post-treatment concentration issues?

Posts: 8
Joined: Feb 2008

I'm a two-time leukemia survivor, and while I'm almost 16 years post-BMT, I've got a few late effects (who doesn't?) from chemo (twice) and TBI (the second time). I'm now a 23-year-old grad student.

My problem is this: after treatment, I've found that I have trouble focusing and concentrating, and I fidget to a fair degree. While I could cope with it for years and got good grades all the way along, I've been noticing the issues have gotten more noticeable in the past few years. My coping strategies aren't working as well, so I spend a LOT of time on readings and papers (since I'm studying English, this is pretty much all I do) and am usually up very late struggling to get through. But no one takes my concerns seriously. As long as I get good grades, no one seems to worry or care.

Have any other long-term survivors noticed this problem? I know breast cancer survivors report "chemo brain," but to what degree is this across the cancer spectrum? I guess I'm asking for advice on what I should do next. It's hard to ask for help on this sort of thing, because my treatment was a ways back, and my current primary doc really isn't up on long-term guidelines. Thanks!

manna1qd's picture
Posts: 48
Joined: Dec 2007

Holly smoke! This must be a divine appointment! Did you see my post? I read your topic but I just didn't get it. I rest my case. I can totally can relate to you. Chemobrain was a fog I felt mentally closer to treatment, maybe two or three years later even and it was so bad I would just stop in my tracks and have to think. One time, I lost track of things at work and I had to stop and ask my coworker to take over. That was the worst of it at work. I also created coping stradegies that aren't working to well right now. I need a visual cue or a reminder for everything. My short term memory is awful but I also notice that my retention of events or decisions from a few months ago don't register. I TAKE YOU SERIOUSLY! My intention is to discuss this with my oncologist at my next visit. For some reason, it is getting on my nerves lately. Besides memory, I am a slow thinker. I will eventually get to the answer but it takes a few seconds to get from point A to point B. I don't get upset anymore, I just wait - "one mississippi, two mississippi, three missi - there it is! Hope we get some answers here. Thanks for writing.

Posts: 8
Joined: Feb 2008

Thanks for replying! It's good to know I'm not alone in this. And answers would be terrific. I need a new oncologist; mine does a good job with patients currently in treatment, but doesn't know how to deal with long-term issues. Everything, in his mind, requires a trip through an MRI. Everything, no matter what. But if yours is good, push for those answers. No survivor should be stuck in this kind of fog if there's something the docs can do about it.

Not many people take it seriously, believe me. I wish you the best of luck in talking to your doctor about it, and I hope you get it as resolved as you can!

Racht's picture
Posts: 40
Joined: Nov 2005

Hi there, I understand your struggle. I've been there too. I'm still there. I have found that taking a pharmaceutical grade of fish oil and getting regular chiropractic adjustments is so far the only thing that makes it at all manageable. I'd recommend both. I know it is frustrating. I am a freelance writer and I've only now started writing again (because of inability to focus) and even then- I have a friend do my editing for me, where I used to do both. I have chunks of time I just don't remember at all and my short term memory is nothing compared to what it once was...before treatments. I understand what you're going through and if you ever want to just talk about it, feel free and write.
Hang in there!

Posts: 8
Joined: Feb 2008

I appreciate the reply, and thanks for the support! It's great to hear from another writer on the subject. I hadn't thought about chiropractic adjustments; do you have the doc work anything in particular, or do you have them do a general adjustment?

The writing is the hardest. It stinks being in the middle of a paper (or just beginning one!) and getting stuck... and frustrated... and more frustrated, just because I can't cannot focus. I get up and move around, go do something else, and by the time my head's clear and focused again, it's 2am and I'm staring down a big deadline.

The short term memory isn't quite so bad for me, but there are times where, if I'm not paying close attention, I'll forget what it was I was supposed to do.

Posts: 2
Joined: Feb 2008

Congrats on being a leuk survivor (TWICE!) I'm 19 years post BMT (allogenic) (i'm 38 now). I had TBI and tons of chemo. I had already gone thru an aggressive chemo regiment and 3 weeks of radiation before the bmt(that obviously were not sucessful). I feel like my memory is impaired, and my concentration is poor. I work as a Microbiologist and the bad memory & being easily distracted really scares me. I feel like my primary md doesn't have a handle on my medical needs. There should be docs who specialize in the issues long term cancer surviors. I'm very close to Boston, if anyone knows of any please clue me in. Also, you know how they have medications for people with early stages of altzheimers? I wonder if they have anything for us chemo brain fog folks. PS. Pardon the spelling errors...can't blame that on the cancer treatment, I've always been a bad speller (and don't care to bother with spell check!).

Posts: 8
Joined: Feb 2008

I can't testify to the Boston area, but I can tell you that you're not alone in having a primary that doesn't have a clue. I'm tempted to print out all 300+ pages of the Guidelines and dropping them on the exam table next time I go in. ;) I'll just tell her that I thought she needed some light reading.

As far as medications go, I'm thinking that I'd probably get put on whatever they're using for ADD/ADHD nowadays, to control the lack of concentration and the fidgets. I'd much rather get some assistance with coping mechanisms. I can see why you'd be concerned, being a microbiologist and all. What about those little brain-trainer games? Those might be something to try out.

I hope you can get some resolution. 19 years post-BMT is a benchmark that should give you some authority when you go in next. Go in and let them know how you feel! I think at this point, we've got to start giving folks earfuls.(I know, this from the timid-ish original poster! A chat with a fellow survivor at school put some spine into me.) Good luck; I hope that it works out for you.

CherylHutch's picture
Posts: 1399
Joined: Apr 2007

First... congratulations on being a two-time survivor!! What a journey you must have gone through to get to where you are today!

My problem with memory/concentration is a little different than what the others have noted here in this thread. My oncologist is totally sympathetic with the memory loss/chemobrain issue and is aware that many chemo patients suffer with it. I am not a "long term" survivor yet, so do not know if I will still be suffering from it years from now or not and since I'm considerably older than you (53 yrs), then it will be hard to determine if it's a long term chemo affect, or if it's age related.

I think this is why they have such a problem pinpointing the problem... because everyone's situation is different even if the complaint is the same. Some may be pre-menopausal, menopausal or post-menopausal, whereas they can rule that out for men. Age would play a big part with memory loss. The type of chemo and how much. The fact you went through treatments twice vs someone who went through treatments only once, yet you might both be experiencing the same problems.

I'm not sure if there are any answers out there but I agree, I do think that this is something that would make for a great study. Long term survivors and what affects they may still have 5, 10, 15, 25 years later!

blueroses's picture
Posts: 527
Joined: Jul 2008

Hi, I am a long term survivor of NHL with many late effects and one of them is chemo brain. I have noticed it getting worse, trying to come up with words and not being able to find the right ones and concentration is getting worse as well. I am forgetting more and more short term things as well and it is getting more and more worrisome. Docs and others blame it on getting older, I am 58, but it's more than that, I can feel it. You feel 'fuzzy' in your thinking and zone out often. See if you can get a referral to some testing for these issues through your GP. Trying to get docs to recognize late effects is a big job but they are coming around and admitting it. There are lobby groups also for childhood cancer survivors but those of us who developed cancer later in life but now have outlived the norm and are experiencing late effects are still far from being heard. I believe you and so do many many others who are experiencing the very same thing.

Posts: 3
Joined: Jul 2009

Hi, I have been cured of A.L.L since 1980 and starting treatment in 1971-1975. I have problems with short term memory and learning disabilities since 1975. I received 2400 rads of radiation to my frontal lobe and I believe that it cause some permanent damage.

Posts: 5
Joined: Sep 2009

I was diag with anal cancer March 09 with mets to left pelvic wall. Went through chemo/rad for 5 weeks. My last treatment was June 18, 09. Am I expecting to much to go back to work now? My concentration and memory have improved greatly for now. Does fish oil help? Are there other suppliments I should know about. I still suffer from fatigue but I will talk about that on that thread.

bluerose's picture
Posts: 1112
Joined: Jul 2009

You can tell I have chemo brain as I posted once before on this post and forgot and posted again. Hope I'm not too repetitive but think I have added info anywho.

I am a 20 year survivor of non hodgkins lymphoma and have chemo brain big time. I had an autolgous bone marrow transplant in 1991 after a recurrance and total body radiation and I was told by a neurosurgeon after testing that some of my drugs were ones that crossed the blood brain barrier and weakened the brain, not damaged it really just weakend it. Hmmm. lol. Anywho he explained that what that does is make natural things like aging more difficult as opposed to a brain that hadnt been 'chemoed'. He said too though that it isnt only chemo that can cause these kinds of issues too, some other reasons are memory and cognitive issues due to pain and also due to stress. Of course cancer survivors can have alot of stress in their lives so this too can contribute to memory issues as well as other cognitive functions.

I have other cognitive issues too, the one that does the most harm to my everyday life and reflects on me to those who won't understand is that I often have to script speech. In other words if I go to a docs office and have alot of info to get across I have to make extensive notes and sometimes I even get lost and forget points that way. At times I have to script the whole speech to someone. Lots of work not to mention, like I said how that makes people look at me.

Cancer treatment can be harsh indeed in many ways and cognitive disfunction can happen. Doctors today now recognize that and even use the word 'chemo brain' themselves. The neurosurgeon I had did. What validation for awhile there years back they would just look at me as if I was blaming my aging brain through cancer treatments.

Hope that helps to at least let you know that yes it happens and no you aren't alone. Not sure about radiation to the brain though, I think the neurosurgeon addressed that but um, um, um, I forgot what he said about that. lol. See. lol. Take care. Bluerose

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